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...Recurrence really predominantly is found in radiological imaging reports. It’s not necessarily put into a system that we can routinely receive...[N]one of the registries have access to medical imaging reports on a routine basis. So we don’t even have that one vital piece of information that we need or that vital source. So that’s really hard.
• Differences in what health data sets the population-based cancer registries have access to via health data linkages, hampering the analyses which may be undertaken across the different states and territories. • Most cancer data is collected for clinical application within a treatment-related context, while the population-based cancer registries are secondary users of the data. • Cancer registration processes in some states and territories are still largely manual in nature. • The clinical uses of cancer data collected by health services are not uniform, leading to complexity across the system, with patient data stored in different locations and used for different purposes by various clinicians. • Understanding of cancer stage and other clinical characteristics may evolve over time, and initial pathological conclusions may differ from the conclusions reached after additional tests and examinations. • Differences in what health data sets the PBCRs have access to via health data linkages, hampering the insights obtainable through the linkage of data sets such as admitted patient data with information routinely collected by the registries. • The increasing use of neoadjuvant therapies and its impact on cancer registration processes, particularly the collection of cancer stage at diagnosis.
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The clinical stage of the patient at diagnosis might be stage 3 and then they have neoadjuvant chemotherapy and their stage at the time they have a pathology report might be staged differently and sometimes the pathologist does or doesn’t know that they’ve had neoadjuvant therapy if they’re not necessarily part of a team or they’re from somewhere where the patient’s treated remotely and so that just adds...maybe an idea that you want clinical stage as well as what you can pull off the pathology reports...
• Differences in the approach to cancer data across public and private health services.
November 2023
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